What Next for the Science of Patient Preference? Interoperability, Standardization, and Transferability

Area of Science:

• Pharmacoeconomics and Health Outcomes Research
• Patient-Reported Outcomes
• Drug Development Science

Background:

• Patient preference information (PPI) incorporation into drug development is crucial for aligning therapies with patient needs and values.
• Significant barriers hinder PPI utilization, including lack of clarity for decision-makers, insufficient trust, and resource limitations (time, budget, expertise).
• Enhancing the value of PPI is achievable by adhering to FAIR principles: Findable, Accessible, Interoperable, and Reusable.

Purpose of the Study:

• To propose a research agenda for developing FAIR PPI.
• To identify necessary advancements in the science of PPI to overcome current limitations.
• To explore strategies for increasing the efficiency and trustworthiness of PPI.

Main Methods:

• Reviewed existing initiatives in data repositories, disease modeling, benefit transfer, and data standards.
• Analyzed barriers to decision-maker clarity, trust, and resource allocation for PPI.
• Examined the potential of FAIR data principles to enhance PPI value.

Main Results:

• Developing FAIR PPI necessitates scientific progress in the field.
• Establishing a dedicated consortium, similar to CDISC or OMOP, is proposed for creating PPI data standards.
• Further research is required to understand and explain variations in patient preferences.

Conclusions:

• Advancing the science of PPI from empirical observations to theoretical frameworks is essential.
• Developing robust PPI data standards and understanding preference variations will improve efficiency and trust.
• Implementing FAIR principles and a collaborative consortium can significantly enhance the role of PPI in drug development.